Thursday, January 31, 2008

This month's Disability Blog Carnival is up at Ryn Tales. I've just discovered the Carnival, and I like it. I even submitted a post this month. Go read some of the excellent entries on the subject of What Professionals Should Know. Many of which I would really have enjoyed showing to various medical-type people this week alone. If only I'd been brave enough.

I have been rather sodding miserable for the past few weeks, hence the obvious dearth of posts. Life has felt a bit rubbish. It's been filled with institutionalised disablism, and stupid pain management doctors that don't believe in managing pain, and patronising pschyologists that seem to think I'm unworthy of support, and managers at work that haven't ordered equipment that they were told in November I desperately needed, and inaccessible social occasions, and people who've forgotten I exist because out of sight is out of mind, and being stuck in one room until I want to throw things (occasionally I do), and DIET. It is in attempt to pull myself out of this unhelpful moping spell that I begin Thing-A-Day. I discovered it just in time. This seems a bit more achieveable than my stupendous failure of an attempt at the 365 Project last year, what with it being only a month long. My difficulty is that my only creative activity is writing, and how can you make THAT interesting for 28 days? I guess I'll start by posting every day (now there's a challenge) and seeing where it takes me. Maybe I can find new ways to say ordinary things.

Tuesday, January 15, 2008

Three things - incredibly important things - from the whole arena of disability rights that I want to talk about over the next couple of days (before I go off to France and maybe attempt wheelchair skiing. Or not, and save myself some dislocations. I haven't decided yet). Here's the first.

A friend of Fran Lyon's has said, on a couple of disability networking sites that I visit, that Fran has had her baby. (Fran's friend has given permission for the news to be shared.) This is a wonderful thing - a mother and baby have not been separated at the child's birth. Nonetheless, Fran has been driven out of the country by the oppressive and appallingly disablist treatment she's received at the hands of social services.

For anyone who doesn't know Fran's story, you can read the Telegraph's take on it here.

The terrifying issue of forced adoption affects a significat number of disabled parents, according to anecdotal evidence from networks I'm involved in, as well as stories and statistics. Co-incidentally, there's more on this in today's Guardian. Disability isn't specifically mentioned here, but a scary number of the cases they reference involve parents with mental health problems.

This situation is not OK. It is not acceptable for disabled people to be subjected to such horrific treatment, to have their children taken from them, to be denied of basic human rights because they might find it more of a challenge to be parents than non-disabled people (because of social barriers created by the same people who are taking their children away, of course - slightly ironic, really, but typical). Our society is infected with institutional disablism. Most people would think that these practices died out in the sixties, or that you can only find them in countries without democracy. They are going on here and now, and it's dreadful. Fran's case makes me ashamed to be a British citizen.

So, I wish Fran a wonderful, happy, safe life with Molly. But I want the British disabled community to protest against what has happened to her. I want us to act, so that disabled parents don't have to face this oppression anymore. I want insitutional disablism to end. How to act against this? I'm far less clear on that. There's so much disablism going on at the moment, so many things I want to campaign about but can't, that I'm slipping into a bit of unhelpful apathy. Well, this post is a start, I hope. Many congratulations, Fran.

Friday, January 11, 2008

Because your ideologies are incompatible with mine, this is what you will do.

~ You will deny me what I need. After all, you know best.

~ You will assert your reality over mine. After all, you know best.

~ You will expect far more from me than I am able to give, then you will tell me I need to do even more. After all, you know best.

~ You will devalue my choices and my existence.

~ You will make your power felt.

~ You will blame me, and my faulty thinking, for my failures. I don't see failures, but you know best.

Because I have choices and autonomy and a mind of my own, this is what I will not do.

~ I will not accept less just because I need more. You made promises. Now you realise they involve more effort than you thought. That doesn't mean you can deny me my rights.

~ I will not accept that, because the way I live my life is threatening to your Map of the World, I have to be the one to change. It's just possible that your view, informed by textbooks and cases and experience as it may be, is not my reality.

~ I will not live with the contradictions that can ruin my life. Either you expect me to spend my time pursuing paid work and being financially self-sufficient, or you want me to crawl towards your idea of 'normality' by giving up hours, days, weeks, months, years of my life to treatments that may or may not be effective. I cannot do both, and I will not. When you have more insight than "Try harder," I might be willing to talk to you.

~ I will not accept the myth that my life is less important because there is less that I can do. Telling me you want to make sure that I "won't have to live [my] life in a wheelchair" is not going to impress me. Neither is suggesting that only with your help can I contribute to society. Show me that I matter, regardless of my personal choices in the areas of mobility aids and part-time work, and maybe we can work together.

~ I will not let you bully me just because you're bigger, an 'expert', and good with excuses. You work for a large organization with a lot of power over a lot of people. I am one person with very little control over my own life. I'm aware that this makes me insignificant to you. I am not insignificant to me.

~ I will not allow anyone to suggest that, because I have a history of mental health problems and a lot of very current anxiety, my views, feelings, reactions and needs aren't important. I am not crazy. I am not stupid. I am not being difficult. I may be very stressed indeed, but for some reason that only happens when you are involved. How interesting.

I'm aware that, through my use of this 'you', I define and dichotimize and demonize and discriminate. I wonder, if I could tell you all this, how you would feel to be on the other side.

Friday, January 04, 2008

Yes, well. We're now four days into 2008, and what have I achieved? Nothing! This week has involved a simply fabulous flare-within-flare incident where first I had a serious attack of the nauseas (which are still keeping me running to the loo - a curse upon tramadol and all its minions), then there was a truly stunning migraine, and now I'm exhausted. I was due to go swimming with my PA this morning, but on waking it occurred to me that not being able to move wasn't a good omen for that, so I postponed her and went back to sleep. I have managed to move out of bed exactly three times today, twice for tea and once to make a cheese salad. It's at times like these that I'm very glad I still have the ability to open packets of leaves and spinach and mix them together to fall back on. It means I can pretend that I still know how to be independent. Isn't that nice. On the plus side, my pre-New-Year bad mood went away, thanks to a lovely, chilled NYE with two friends. At which I drank more than I really should have done, hence all the migraine-y stuff, but hey ho, I enjoyed it a lot. More socialising to be done in 2008, yes indeed. If I can just get out of bed for long enough. Hmm, that might be a New Year's Resolution. That, and making it to church on Sunday, and writing a sodding Ouch blog post, and watching the DVDs my friends have lent me, and eating less chocolate, and...

Onto serious matters. Since I have utterly failed to come up with the proper traditional New Year post, either of the 'review of the year' or the 'resolutions' type, largely because I've been busy throwing up, I thought I would highlight a few things I've found while I've been entertaining myself with posting boards and suchlike today.

1) If you have a mental health problem, or have a close connection with someone who does, take the 'Moving People' survey and make me a happy bunny. This is a consultation on behalf of Mind, Rethink and the Mental Health Alliance, who are planning an awareness campaign aimed at breaking down the stigma associated with mental illness. I would like to see a political, rights-focused campaign. While there have been some interesting ones in the past, they've all been a bit fluffy and 'one-in-four' - and although there's nothing wrong with that, I think it's time to shock and engage people with the facts of how appalling prejudice and discrimination against people with mental health problems still is. But the important thing is that service users have a voice in the campaign. So get surveying and get your views heard, people.

2) My lovely friend Linz has highlighted two petitions, which will soon be closing, relating to the research and treatment of M.E. and Fibromyalgia. Both of which are political/rights issues. These are hugely under-funded and under-resourced conditions, and NICE (an ironic name if there ever was one) is restricting and harming the ways in which people with these conditions receive treatment. This is the relevant post. Go sign the petitions, if you're in the UK (and if you agree with the premise of each, obviously). Cheers!

And talking of my lovely friend Linz, she has tagged me in something called the Meme Challenge. So here's that.

Here are the rules:

1-Link to your tagger and post these rules on your blog2-Share 7 facts about yourself on your blog, some random, some weird3-Tag 6 people at the end of your post by leaving their names as well as links to their blogs4- Let them know they are tagged by leaving a comment on their blog.

7 Facts About Me:

Most of my life, I thought I was 5'3". Then a nurse measured me a couple of years ago and said "Sorry dear, you're 5' 2-and-a-half." I was devastated.

My mother has 22 cousins. Between them they have so many children that we've lost count of the second cousins, but we know there are more than 40. She's Irish.

I am one in 15,000. (Guess.)

For the first twenty-two - or so - years of my life I was a seriously dedicated fundamentalist (and not among the least narrow-minded of those). And I thought being gay was a terrible sin. Ah, how things change. Thank God. Possibly literally...

I have an overwhelming compulsion to name inanimate objects. You've met Marvin and Luna. My current laptop is Mr Crashy IV. His predecessors lived up to their names.

For a couple of years I lived in a house with a swimming pool in the back garden. I went skinny-dipping once or twice. Well, you have to, don't you?

I had about ten teeth removed in my teens, due to overcrowding (it was sort of a cull). Since I now have twenty-nine left, that means I once, theoretically, had a total of thirty-nine teeth. I'd love to get my hands on my dental records and find out exactly how many there were. As you can imagine, I was an odd-looking teenager.